Discussing Hidradenitis Suppurativa with others and ways to navigate
Preface
This is a beloved, older resource blog of mine, revised a few times. I’m improving it with more details and experiences, and I truly hope it helps. Fortunately and unfortunately, I bring years of personal and advocacy experience to this area. Therefore, this resource blog has been redesigned to offer more relatable content and helpful tips and guidance for your personal path.
Let’s Begin!
Are you planning on telling someone new or fairly new about Hidradenitis Suppurativa? Maybe a partner, a family member, a boss, or a friend?
This is difficult and something many people fear.
You may have wondered how to begin this conversation, regardless of the circumstances.
You may be thinking or have thought, “Where do I start, or what should I say?” Like, "Hi....
"I have HS, and I get bumps on my body. Parts of it are located on my private areas."
"I’m also scarred in many places and it can smell."
"Plans sometimes get cancelled due to this illness."
You might have pondered questions such as...
"Is it best to reveal it or keep it a secret and hope it remains undiscovered?"
"Will they even grasp it?"
"How can I tell them this in the best possible way? What words should I use?"
How about the - “WHAT-IFS”?
"What if they’re unable to comprehend HS and my personal situation?"
"What if people assume I’m unhygienic or have a STD?"
"What if they won't like me anymore?"
AND that queasy feeling of having to disclose HS to a partner? More on this below.
Your thoughts and emotions are legitimate.
Below are some tips on disclosing HS to others, including significant others / partners.
- Honesty can be key (when the time comes). And for the sake of fairness and the relationship, disclosing your HS to someone you feel is worthy is an option worth considering.
- When ready, share as much of your personal HS journey and experience as you feel comfortable with and teach them about the illness. Try not to overthink or try too hard.
- To lessen stress and overthinking, build emotional connections first; meaning, wait until you feel comfortable before moving forward. I recommend letting a person discover your inner self and personality first (at least on some level).
- Invest your energy wisely! It’s exhausting to share details about an illness over and over. To me, it’s not worth the energy to explain our personal HS experiences in every new relationship. Simplify your “HS talk” by confiding in those you trust to some extent, or who show a bit of empathy, even if they don’t fully understand HS or your journey.
- Do your best to prepare, but don’t stress. Jot down some to do notes, call a buddy (chat or vent), do a dry run (or role play), play out "the talk" in a mirror or anywhere else. This might sound foolish, but it’s a surprisingly effective exercise. Do something that helps you feel more confident and in feel more in control of the situation.
- If you want to do this in person, select a place/location that is most comfortable for you. In terms of environment. And please be SAFE!
- Make sure your expectations are reasonable. Don’t expect others to fully grasp it all. HS is something that people truly won’t understand until they live it.
- Alternatively, evaluate the situation before disclosing too much; you might simply say, "I have a chronic, debilitating, inflammatory condition". If they inquire more, you can talk further. If needed, refer them to resources like this HS PLATFORM, fixsensadnessforhs.com.
- You can guide them on HS, its available treatments, and your personal coping strategies.
- If you’re comfortable, feel free to invite them to our HS support group HERE.
The more comfortable you are talking about your HS with others, the more you become accepting of yourself and others will naturally follow your lead.
"What about individuals such as a co-worker or someone I’ve known for years?"
Use the same guidance. I would evaluate the circumstances before revealing too much information. If they inquire further, you can talk further. If needed, refer them to resources like this HS PLATFORM, fixsensadnessforhs.com.
Different Alternatives
If you’d rather not, you can skip the in-person chat. Create a letter, email, or text. Set up a video or phone call for the “special talk.” Choose whatever feels most natural. Rules are nonexistent here.
Let’s explore the world of dating now. Initial Encounters / Dates or Recently Dating.
Let's start with the PREDATE. Treat yourselves and schedule some downtime.
Beforehand, do something nice for yourself. Get new, or “new to you”, accessory or shirt, cologne. Get a mini manicure, a haircut or color. Once in a while, I like to change up my look to appear cute or unique to my husband. We’re on a tight budget, so I’ll just purchase a hair accessory in the $3-$6 range. Literally, it could be anything!
Whatever makes you feel good and confident.
If experiencing increased anxiety or stress, consider massage (body, hand, or foot) or acupuncture if affordable (US residents: check with your insurance). You could also look at the additional free resources tagged at the end of this blog.
Remember to schedule some downtime for yourself. Overextension leads to stress and excessive worry. We actively block positive feelings. Feel the good vibes, the butterflies, the chills, the endorphins. Let them in.
As previously noted, do something to boost your confidence and situation control.
Actions like these will bring you peace of mind. It’ll make things less stressful for you, taking your mind off HS. Try to relax, be yourself, and have a good time.
NOW It Is Meet Up / Date Time
You’re either waiting or they’re here, and now you’re really nervous; try to remember, it’s only a date. That’s right, it’s only a date. Try to dismiss this illness from your mind. HS is not on this date, you are. Have some fun with it.
Keep in mind that you don’t need to date this person long-term or be intimate with them right away. Disclosing health information on a first, or even third, date is unnecessary. Breathe deeply and center yourself in the moment. Give them the chance to learn about you.
Make sure you’re in comfy clothes! We all want to look our best, I know. It may be a challenge to look cute, hot, and sexy, but not out of reach. My suggestion is to always prioritize comfort, no matter your decision.
Darker clothes are better if you’re worried about drainage. TRUST.
Don’t forget your HS NEED NOW BAG. Seriously, don't forget it. 💜
Oh BOY Things Are Getting Serious!?!
This dating experience has been positive; you're really into this person. You might eventually feel comfortable enough with this someone to become intimate. Now what?
You might have thoughts of:
"Will they feel it?"
"What if my abscesses breaks?
"Will they smell it?"
"How do I explain that I want to keep the lights off?"
"AAHHRRG!"
It can be very stressful! It’s normal to be overwhelmed by thoughts at this point. Take a deep breath.
SO, you’re considering sharing your Hidradenitis Suppurativa with that someone special.
First, please refer back to my previous blog discussion tips above. "tips on disclosing HS to others, including significant others / partners". *Share as much of your HS journey and experience as you feel comfortable with and teach them about the illness.
As mentioned earlier, honesty can be key. When the time comes and for the sake of fairness of a relationship, disclosing your HS to your partner is an option worth considering.
To reduce stress and overthinking, connect emotionally first, wait to feel comfortable before proceeding. I recommend letting them discover your inner self and personality first. Ensure that you both desire a relationship with each other. Be upfront with them about your feelings (if you’re considering a more serious relationship with this person). It’s better to know this now, before things get more serious. Then evaluate if this person is “worthy” of and can handle it all (more on this further below).
If you feel this is the person you want to pursue something more with, it’s only fair to be honest with them so they can make the best decision for themselves and so you know how they feel. It is best to know this sooner rather than later and before deep feelings develop. Have faith in me on this one.
I hate to say this, but we’re not everyone’s cup of tea.
It is important to understand that not everyone is capable of handling a situation where the other person has a chronic illness, regardless of what type of illness. If you find that they shy away or need time to think and process. And sometimes they might even ghost (not hearing from again). PLEASE do NOT take this personally. Knowing they cannot handle the situation is something you should know right away. And this is nothing you did wrong.
No matter what happens, you are worthy of love. And in MOST cases, people are understanding and will strongly support you. Don’t let HS stop you from dating, having fun, and finding love!
Your Mental and Emotional Well Being
The negative effects of Hidradenitis Suppurativa on mental and emotional well-being can impact dating and social life. Consider speaking with a therapist; they can assist in managing the mental and emotional effects of your illness and help you process your feelings.
Find support among others facing the same condition. Online support groups can offer comfort and can be a valuable resource.
Additionally, resources ONE, TWO, and THREE, may offer considerable help on this journey.
HS warriors, though beautifully flawed, are all equally deserving, and sometimes, even more so I believe.) We strive to feel ordinary, we work hard to feel attractive at times, we battle to maintain a smile, we conquer discomfort to embrace life - we are fighters. We remain strong, determined, and persistently overcome challenges. Our fight for a fulfilling life surpasses most, and a special someone will comprehend and cherish that about you?!
Should anyone fail to support you and Hidradenitis. Move on and surrounding yourself with more accepting people.
Stay strong!
Special Note: Written by Denise Fixsen. This part of the platform is dedicated to genuine “keeping it real” content. While research informs my guidance and advice at times, HERE this it’s mainly based on my decades of experience and behavioral observations. Therefore, in this section, I’ll just be myself and do what I love—helping others. I won’t be citing sources here, however this information is backed by my 46 years of living with Hidradenitis Suppurativa, 10 years of dealing with multiple chronic illnesses, 36 years of advocacy, and continuous CME.
Please note that I’ve made the decision to no longer use editors for my articles, especially for my blogs. Despite potential grammatical errors stemming from brain illnesses (mainly), my content is reliable and solid.
Medical Disclaimer: This content is solely for information, education, and support. The purpose is not to serve as a replacement for professional medical advice, diagnosis, or treatments. FDA Disclaimer: any materials mentioning treatments, procedures, supplements, etc., have not been evaluated by the FDA and are not intended for diagnosing, treating, curing, or preventing any disease or health condition.
Resource Blog Posted on 12-22-2024
This current resource blog, now called “Discussing Hidradenitis Suppurativa with others and ways to navigate.”, has been updated (to rev 6), posted on fixsensadnessforhs.com (12-22-2024). Rev 6 contains original materials/content from 1997 along with additional current updated material.
IMPORTANT: another version of my article titled, “Telling People About Hidradenitis Suppurativa” may exist elsewhere on another website, unauthorized and uncredited. I do not approve of the use of the article titled "Telling People About Hidradenitis Suppurativa" that is on other sites. This particular article holds a lifetime of experiences, special moments, and memories for me. And has been with me for years. Thank you and be well.